Posted by Cassandra on October 31, 1998 at 01:44:55:
I read DJ's post about the Dr. Lawrence Howards' guest column to the Journal. My letter to the Health Reporter is as follows:
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I have just finished reading Dr. Lawrence A. Howards' column on Cluster Headaches from September 17, 1998 and frankly, I am appalled. As co-director of a pain management clinic, he should be more responsible with his generalizations, and you should have been more responsible in choosing your source for Cluster Headache information. The Headache Foundation, for instance, has a wealth of information on what a Cluster Headache is, medications available, and sources for more information. Your column has done much harm to those who suffer Cluster Headaches.
There are few resources available to those that suffer from CH, and it is my pleasure to inform you of a website dedicated to Cluster Headaches - clusterheadaches.com - with links and a lot of good, accurate information about CH. Contrary to what Dr. Howards wrote in his article, a great many WOMEN suffer from Cluster Headaches. From the posts I've seen, the number is much higher than anyone might have imagined.
The experience is not just a painful one for men and women - it is a horrifically terrifying one! Various names and discriptions I've found posted for these headaches are "Kamikaze headaches", "Suicide headaches", and "... the pain is worse than accidental amputation". They totally disrupt the sufferer's life, and that of their loved-ones and co-workers. Most CH sufferers are hit with their worst headaches @ 1 - 2 hours after falling asleep, while they are asleep, and wake to blinding pain that leads to some people banging their heads on whatever object is closest because they have to create a different kind of pain to cope. They pace, rock, cry, scream... a migraine has got NOTHING on a Cluster besides the fact that it is also a vascular headache.
Why are migraines more familiar to the public? They are constantly in the public eye, and are made to be the worst possible headache you could have, but most migraine sufferers can take a pill and lay down in a dark room for relief. Cluster headache sufferers never know when they are going to get hit with the next one, and after a while, they fear leaving the home because they don't want to be caught out in public when they do. Three or four months seems to be a typical cycle, with little or no sleep. Some people become chronic and never break out of the cycle at all. Some people have had these headaches for 30 - 40 years!!! If you have coronary problems, you can't even take any of the normally prescribed medications... most of them do considerable damage to the heart and liver, not to mention the rest of the body's systems!
Dr. Howards in no way conveyed the severity of these headaches in his column. He did not stress any of the detrimental factors inclusive to having these headaches - loss of jobs, loss of family and friends, loss of sanity, loss of LIFE - and I feel he was quite remiss. To quite a few of us who have become connected from around the globe through the website mentioned earlier, Cluster Headaches are a very serious issue, and we are all striving to find ways to help each other get through the cycle of headaches. I believe I speak for all of us when I say that Cluster Headaches should be represented as they truly are, by people that truly know what it's like to suffer from them, and any publication that does not do its homework should make the effort to undo the harm it's caused. We are all constantly looking for relief, if not a cure, and all this article did was make our cause that much less important.
Please do a follow up article, with accurate facts, and PLEASE stress how important it is to us to find a cure. Not enough doctors know about CH's and the medications used to treat them as they do not usually bother to go outside what they already know. A lot of people are made to feel thay are nutcases when they show up at the hospital scared to death, and the headache has gone away by the time they get there. Accurate, timely reporting is essential to informing the public, and I hope you will take it upon yourself to address this matter. Thank you for your attention.
Sincerely,
Cassandra L. Isetts, the daughter of a CH sufferer
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I only hope it helps.....